STEAM ROOM FOR ANGER

AliceBastable

Runor, exactly! I always think of the British comedy series Red Dwarf, when they were facing a deadly enemy, one of the characters said "First we'll plan a leaflet campaign, and if that doesn't work, we'll do TEE SHIRTS!"

Yndorian, other cancers and diseases do have different months, and ribbons. It's almost funny, because of course there are more than 12 types of cancer, or diseases. Here's a mind-boggling list of the confusion of colors and months just for cancer. I guess we're all supposed to carry a chart. https://www.medicalnewstoday.com/articles/323448.p...

Jaycee49, I guess if it's a person who had cancer, it's okay. I just would feel like an absolute derp if I posted the equivalent of "Let's hear it for cancer!"

marijen

That’s ridiculous. Who can remember all that? Silly. Appendix cancer? I wish I didn’t know this

Yndorian

I didn'tdea. What a stupidity

Yndorian

I had not idea. What a stupidity

runor

Jaycee, I'm just so damn amazing.

Meow13

I am so sick of people telling others to go with the most aggressive treatment so you can live with yourself if it comes back. Give me a break.

Lita57

...and this pin is just a partial list.

pingpong1953

Not only do we have to remember all of the different cancers, we have to be able to distinguish between violet and lavender. Add all of the other diseases that have their ribbons, we'll need to start referring by Pantone colour numbers. Too much marketing and not enough serious discussion.

movingsoccermom

My latest I cannot believe moment. I have been trying to get back to see my kids (CA) since before Mother's Day. I was supposed to celebrate with them, but then something came up on the mammogram and I have been hitched to the crazy train since. Called the airline yesterday to rebook (for the second time) my ticket and started out stating what the oncologist told me (18months). Guess what the agent said!!!!! I UNDERSTAND!!!!!!! If I had not been coughing (post EBUS) I would have been laughing hysterically. I understand. I really doubt it. Cancer is not a new disease. You would think by now people would have learned to engage their brains, but nope.

Artista964

I agree all cancer matters but I think the reason for the colored ribbens is for personal reasons. A loved one dies and the person may like to wear or display the color representing the cancer. I like the choice. I could see using the color of the cancer with white flowers at a funeral. I used a blue ribbon with white flowers for my uncle's funeral. Blue is colon cancer.

Artista964

maybe the agent said I understand as in for the need to rebook and not that she understands cancer? Unless it's clear, i give the benefit of doubt. Most people aren't trying to be mean or stupid. I'm glad you didn't laugh..

mara51506

I don't have a problem with the ribbons. I agree all cancers matter too. If a person only posts to Facebook if in a position to support a person, the gesture is empty and designed to make a person look better. Facebook posts are great but also support us as well.

Artista964

I think if someone has never had cancer or been close to someone who has, they may not realize stage 0 to 3 vs 4. I know I didn't and I used to say some things that may have angered the person but certainly not intentional. Some people may dig to learn more, some not. That's why I don't get upset if someone says something stupid unless I know it's ill willed. If it really bothered me I would educate in a nice way. I go the innocent unless proven guilty route.

JCSLibrarian

In the past week I have spoken with two cancer survivors that even after I explained I had MBC still asked how long I would need to have chemo. It amazes me how little people understand about the “always” part of this diagnosis. I suppose when a person is diagnosed with cancer they pay attention only to the parts/information pertaining to them. I do not care for the “relentless” commercials on TV, but it does kind of address the fact that MBC is a forever diagnosis. Talking with the chemo nurse today we discussed how getting to a maintenance program with chemo makes this a real win for the drug companies. There may be a push for a cure, but the bigger push is to find a maintenance drug. That’s where the cash flow is. Think diabetes. You never hear about a cure, just about insulin and maintenanc.

Artista964

I think you're right. I just dug around with stage 3. I just happened to be interested after my own tx plan was in place about stage 4. I didn't know the details of mbc. And even now I know the basics. Unless you live it, it'd be hard pressed to know details.

Lita57

I don't use METASTATIC anymore. People just don't know what it means, and I'm no longer going to spend 5+ mins. defining it for them anymore.

Now I use TERMINAL cancer, and I tell them I literally have MONTHS to live. They all get that. Because I have brain mets that could hemorrhage and liver mets where my liver could become encapsulated any day, I'm not lying. Palliative Dr says I could go in six weeks, six months, sixteen months.....or six minutes, if I start bleeding, so It's not a lie.

L

JCSLibrarian

I hear you Lita57. It does take a while to explain what Metastatic means. I personally (and naively) do not like the word “terminal”, but can see how it would work. I have had to convince my MO that I do not see myself as terminal and want a treatment plan that includes the possibility of a long stretch of NED, maybe even a cure! I am sorry your prognosis is so bleak. (( )) to you and know I too stare into that abyss, maybe not as closely as you, but it is there all the same.

dtad

Hi everyone...ok here I go. Maybe I have some extra anger to get rid of today but I'm so tired of people in this community not respecting the wishes of others. I will never understand why anyone would be angry about what treatments people do or don't do. Isn't it a personal choice? It reminds of people who drink that are intimidated by people who don't. Why do you care? I'm not offended that you do and I just want that in return. Why do people go on forums like the alternative one or threads that are titled refusing ani hormone therapy and use scare tactics? I would never question their choices, why question mine? IMO we should all just be respectful. It also angers me when they assume we haven't done our research or we are just uneducated. Nobody knows my personal journey, unless they ask and people who do that don't ever ask!

mara51506

I gently remind people in my life who think I will live 20 years that it's highly unlikely. I have a decent life and do not worry about too much now but that can change. The terminal DX does not bother me, my family should be aware so it doesn't whack them over the head when it happens.

movingsoccermom

Agreed dtad.

My new MO had the decency to tell me that fully 20% of women cannot tolerate AI's. Sadly, I am among that group. My side effects were extreme, including notable vertigo, at which point I quit trying. I most probably have a met to my lung now, and do not regret my decision. There was no point for me to spend 5 years, curled up in an immovable ball screaming at everyone around me. I further found an article describing late onset schizophrenia in women with severe drops in estrogen. Reinforcement for my personal choice. I would never judge someone's choices and hope the same courtesy is extended to me.

All the best

marijen

An unmovable ball is a great description! I question why we are forced to take the generics made in foreign countries and whatever is cheapest to the pharmacy on a given day. Who knows what we are really getting?

Artista964

I'm kn the 20% who can't do AIs. Luckily Tamoxifen isn't bad on me.

Yndorian

Movingsoccermom: My mom had an histerecthomy and oosph at 46 (not related with cancer but still) she is now in 75 and she has any kind of dementia in initial stage (she is taking memantine and donepezil) After read your post I can relate both things

Meow13

I hate the "Are you going to blame yourself if the cancer comes back?", No I am not! It is kind a form of bullying. Like you weren't selfless enough to do the hard treatment, you wanted an easier path. I want to live with my QOL intact.

movingsoccermom

Yndorian, so sorry to hear about your Mom!

Meow, indeed. There are only hard choices and screaming at my loved ones was not a choice for me. And someday I hope to beat my DH (exceptional tennis player) at his own game!

All the best.

bennybear

meow, totally agree! My MO first said to me you have to have no regrets, then when she saw what had happened to my bone density she said I couldn’t take it, I had given it a good try. I just wish they would be upfront with a personal risk benefits so we can all make an informed decision on what is best for each of us.

Truly it is an individual decision, based on each individuals situation, lets all just support each other.

bcincolorado

Families do not understand the choices at all unfortunately. I do not share everything with mine at all and if something comes up then they try to give me a bad time for "not sharing". It is that we do not want judgements from them and complaints. It is our life. We are tired. Sick of doctors. Sick of feeling sick and tired. Too old before our time.

Haliday

I am using this thread for its intended purpose! As the boss at my work, I do NOT want to take my frustration out on my employees but find myself more thin-skinned and easy to aggravate than I can ever remember. So here goes!

1)Deliver me from zealots. Pink zealots. Things happen for a reason zealots. Religious zealots. Cult vitamin and diet/nitrition zealots and you will be fine zealots.

2) Deliver me from people who haven't googled The Ten Stupid Things Not to Say People with Cancer!

3)Deliver me from people who want to engage me in long conversations about my treatments when I have a caringbridge account I have asked people to read in order to compartmentalize and avoid such conversations.

4)Deliver me from the medical bureaucracy and the siloing and lack of communication between departments.

5)Deliver me from people who tell me I shouldn't be stressed and then do things that cause me stress!

I feel better already. On with my working Saturday before I start radiation on Tuesday.

Live your life. Live your life.

dtad

movingsoccermom...My BS at a major NYC teaching hospital told me 40-50 percent do not complete the recommended time due to side effects. I'm happy for anyone who does well on anti hormone treatment. I'm not disputing that they can reduce recurrence rates. I just don't understand how with that high of a non compliance rate it can be called an effective treatment. Good luck to all navigating this complicated disease.

Karenfizedbo15

Simply YIP Haliday